Things Fall Apart

“There is no story that is not true.”
― Chinua AchebeThings Fall Apart
Lagoon Nebula
Whenever I am feeling as if the goal I have worked towards is becoming further out of reach through no fault of mine, but because the “system” itself is to blame, the title of this famous novel, Things Fall Apart, always pops into my consciousness, stopping my mind from endless fretting over all the tiny problems I am encountering.
“Things fall apart”, the refrain always in the background as I go about my day trying not to scream at someone on the phone, remaining calm in the face of near catastrophe, scheduling a meeting to deal with problems, emailing and texting and venting with friends and family.
Things fall part: The system is poorly designed.
Things fall apart: People are inherently fallible.
Things fall apart: No one really cares enough to make it work.
Things fall apart: Because it is too difficult to maintain.
Things fall apart: You are too idealistic.
Things fall part: You are too rigid.
Things fall apart: Because you haven’t communicated well enough.
There is no harmony, no pulling together, no common goal.
For the past two years, I have been working towards making a better life for my daughter and other adults with autism.
With the help of another like-minded parent, a plan was developed for a quality residence and day program that would give her the opportunity to have a meaningful fulfilling happy life.
Last June, Lily moved into the residence and in many ways it worked much better than her previous house. She settled in and was happier almost immediately.
Then it became clear that the management was not working out and there was an almost complete change in staff after the first six months. The old symptoms of anxiety began to slowly worsen. Housemates also had problems. Supervisory staff was not responding in a very constructive manner.
Things were falling apart.
After much discussion, plans are in place to start over, to recruit better staff with better
supervision and support.
I am dealing with my feelings of disappointment and anger by scheduling meetings and talking about the original goals. We will try to discover new ways to improve the “system”, to work on the  old school mind-set, to revolutionize the way our children and loved ones are living.
 ” Things fall apart; the centre cannot hold;”
-William Butler Yeats, The Second Coming
 
gyre
Things fall apart, because the world changes, society changes, needs change as we change.
Change happens.
Life is change.
“You can’t make an omelet without breaking eggs.”
broken.eggs_.earth_.shutter
I just have to keep thinking that things fall apart
shocking-video-of-how-colored-chicks-are-made-in-india
in order for something better to come through.
This is true for the world at large and how I cope with the horrors of the daily news, just as it is true for all the other barriers and obstacles in my every day life.

Holiday Blues: Women and babies

I made several resolutions this holiday season and the first was to start writing in this space again. As you see it is a few days late for a January 1 start, but maybe I will modify the “Daily Post” to Weekly Post” or “Monthly Post”.

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In December, I visited with my niece and her new baby in their new home in Portland, Oregon, on the opposite coast from where she was born, in Portland, Maine. Memories of my niece as an infant, of myself as a young woman (and a very inept babysitter), and of myself as a new mother have been surrounding me since.

We are a bit alike, my niece and I, and there are many photographs in the family that bear this out. At her house, there was a photo of her  standing on the rocks with her dog on an island in Maine that is nearly identical to one that my husband has on his desk of me and my dogs at a similar age, foggy background, craggy cliffs and all.

I was there during her last week at home alone with her infant before returning to work. The freedom to stay in sweatpants and spend every waking moment gazing at her beloved child would be soon coming to an end. Anger at the unsympathetic employer and fear at leaving her precious daughter in an infant daycare were prime topics of conversation.

Women in the workplace is a big topic these days as always. Why aren’t there more female CEOs and Members of the Board? Why are women still paid less than their male counterparts? What keeps women from advancing in Academia? Why are there so few female Heads of Departments in Medical Schools and major hospitals?

Returning to work for most new mothers is not just a matter of finding childcare. There are, of course, the division of labor issues such as who gets up in the night with the baby and who stays home with the children when they are sick. There are also, and perhaps more difficult to manage emotionally, the issues around the all-encompassing love that new mothers feel for their newborn.

I could not describe in words how much love I felt for my baby and how little everything else meant in comparison to that love. Returning to work was inevitable for me in my situation but I often wonder what life might have been like for our family had I bucked convention and stayed home. I am sure that my niece had conflicting feelings on this topic as well although she did not voice them. While working is actually easier than motherhood, many would choose the harder path if they thought they could.

Women will thrive outside the home when our society supports the needs of the entire family. We cannot “have it all” even though we continue to try. Both parents should take extended family leave after a new child joins the family and safe childcare at the work place should be the norm and not just for the richest of the rich.

This is not a “new” topic and as a product of the women’s lib and civil rights era I wonder why we have not come further in this journey towards inclusion and equality for all.

Autism and Medicaid: No Room for Debate

 

Did anyone watch the Obama/Romney debate last night? None of my close friends did, probably because they already are among the “decided”.  See the complete video and read the transcript Here.

If you watched, and if you are as obsessed with autism as I am, then you immediately noticed the President’s reference to Medicaid and families with autism.

As I indicated before, when you talk about shifting Medicaid to states, we’re talking about potentially a — a 30 — a 30 percent cut in Medicaid over time. Now, you know, that may not seem like a big deal when it just is — you know, numbers on a sheet of paper, but if we’re talking about a family who’s got an autistic kid and is depending on that Medicaid, that’s a big problem. And governors are creative. There’s no doubt about it. But they’re not creative enough to make up for 30 percent of revenue on something like Medicaid. What ends up happening is some people end up not getting help.

If you are anything like me, you probably did not know that the majority of expenses for the long-term care of the disabled comes from Medicaid.

You probably thought Medicaid was just health insurance for the poor.

Perhaps you thought wealthy states, such as Massachusetts, paid for the care of disabled citizens because of high moral values and a commitment to caring for the most unfortunate of unfortunates.

Medicaid, (Mass Health in Massachusetts), pays for health care for the poor and treatment of autism for children certainly comes under that heading.

For my adult autistic daughter, over 60% of the cost of her day program is funded by Medicaid.  Her home is paid for by a combination of Medicaid and her SSI (Supplemental Security Income) check.

Decades ago now, the Medicaid Waiver was instituted to encourage the movement of disabled individuals out of institutions and nursing homes into more inclusive residential settings in the community.  This allows for my daughter and others like her to live in group homes instead of outmoded and often cruel state hospitals.

Preparing to go to a new home.

In other states, movement away from institutionalization has been slow. This story here from the NY Times narrates the transition for one man in Georgia. In Massachusetts where we live  a few families have resisted moving their children and they remain in the institution where they have lived most of their lives, at great expense to the commonwealth.

Even in Massachusetts there are yearly budget battles where well-meaning legislators and the governor try to parse out dwindling funds in the most humane way possible. Direct care staff did not receive pay increases over many years and family support services to those individuals who stay in their homes are continually under attack.

Imagine a scenario where each state is entirely allowed to decide what to do with all of the money.  As it is, the dollars do not go far enough and states move money around creatively to fill their own needs. Who do you think is usually on the bottom of the pile, mostly unable to speak for themselves?

Would some states choose to fund only home care? How many more hurdles would they put in place for desperate families to stumble over? Would some leave the majority of the financial burden to “faith-based” charitable organizations?

I have never understood why in some people’s minds it is ok to let some Americans be more equal than others. Why shouldn’t the intellectually disabled adults in Georgia or Maine have the same opportunities as they would in Massachusetts? Why have a United States if you don’t want to share?

 

Restoring a River with Community Partnerships: A template for change

Last month I had the pleasure of attending the symbolic ceremony marking the Penobscot River Restoration Project, the destruction and removal of the Great Works Dam in Old Town, Maine. Now this dam has been breached and those of you who enjoy watching large machines destroy things can watch here.

I grew up near the Penobscot River and back then, in the 1950’s and 60’s, rivers in Maine were barely alive. The Penobscot never froze over in those winter days and did not support fish life. The salmon and sturgeon, the alewives and striped bass, declined almost to the point of extinction.

Over a decade ago, conservation groups, the Penobscot Indian Nation, communities and governments came together and participated in a collaborative effort to restore the health of this river.  The water quality had already improved, thanks to clean water laws initially proposed and enacted by legislation begun in the 60’s by the state legislature, including my mother, who was a representative from Orono, Maine.

Now, the goals of these collaborating groups are being realized in the form of actual removal of dams and the building of modern fish diverters and elevators around the dams that will remain. Over one thousand miles of water will be reclaimed by nature; hopefully, returning salmon and alewives will find it a healthy home to spawn and reproduce.

Restoring the health of the river will contribute in many ways to restoring the health of those who live work and play on it, including the Native people, those who fish in the river, in saltwater bays and in the Gulf of Maine, and visitors from away. More fish contributes to more fish, therefore more fishing.  Sometimes things are just that simple.

I cannot help but see this as a metaphor for life today and for my efforts to build  a new life for my daughter and her peers. We must persevere in the face of entrenched and antiquated ideas about what is possible, collaborating with others even when the groups seem to have opposing priorities. Old and crumbling obstacles must be removed and the natural way restored so that our children, our most fragile and vulnerable resource, be allowed to flourish in a dangerously damaged environment.

Listening to the speeches by the dignitaries at the ceremony, I heard many words matching the phrases I heard at the planning day for autism programs at the agency I have been working with:

  • Partnership
  • Quality of Life
  • Positive Change
  • Innovative
  • Community Collaboration
  • Leadership

As disability advocates, we have much to learn from this example in the conservation community.

My mother would be proud that people working together could achieve so much for this Penobscot River, for Maine and for the health of the environment.  I hope that other groups of people can collaborate to achieve their individual goals in a similar manner.

I plan to keep this milestone achievement in my mind as inspiration as I work to move my “Restoration” project forward in the next years: my “Peaceful Revolution”.

 

Happy Independence Day: Let’s all revolt for Liberty and Justice for All

The declaration of independence inserts itself into all things today, so why not bring it up again here (for a transcript).

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

I believe these rights to refer to ALL people, inclusive of race, religion, gender, abilities or dis-abilities.

The first part, that often gets left out when people try to quote from their grade-school memory banks,  contains one of my favorite phrases:

When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature’s God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

“Laws of Nature and of Nature’s God”.

Note that this does not say “Christian” god, or “Jesus”, or refer in any way to the bible, new or old testament.  Although the “Founders” of our nation came from a christian tradition, their writings did not refer to christianity above all other religions.

The “laws of nature”: sounds a bit like science to me.

“Nature’s God”: could be any god at all, including pagan.

Our forefathers came to these shores to remove themselves from a society that was rigid and stultified. They were often persecuted and their lives were in danger because of their beliefs or lack of beliefs. Like the immigrants that came later, they were fleeing to a new land of Freedom and Liberty.

There were some initial attempts at recreating England here in the colonies. Religious liberty was curtailed in Boston forcing free thinkers like Roger Williams to move on to Rhode Island to start again. By the time of the Revolution, thirteen colonies existed with separate laws and currencies, and, separate religious affiliations, and yet, a common goal: to be free of the old ways and move on.

So I say: “Revolt!” Leave the old ways, the old thinking, and move forward. The time for revolution is now!  Join  your compatriots in making a place for everyone in this new century. The old laws that discriminate against race and gender, that prohibit, that protect hate, that keep society divided, that breed fear and distrust; those old ways of living and thinking are behind us and we will move forward into century that aspires to fairness  and freedom for all of our members.

By the way, in case you are thinking I belong with the idealists and dreamers, those who romanticize “revolution” in all it’s forms.  I am fully aware that no revolutions have solved all the problems that they were meant to, even ours.

I leave soon for Russia, to visit the place where my husband has worked for twenty plus years (while I have been caring for our lovely Lily). Certainly the Russian people’s attempt at change via revolution has not been as successful as they had planned, nor has their re-entry into global capitalism been smooth.

Americans forget that we revolted at a time when Europe was in turmoil and the age of enlightenment encouraged many philosophers and intellectuals to reconsider how nations could be organized to better allow the rights of all peoples. Even Catherine the Great, Empress of all the Russias at the time, was a devotee of these new ideas. She could not find a way to bring her country out of slavery and serfdom in her life time and it took a violent and bloody revolution, like that of France and over a hundred years later, to finally free the serfs.

So I am not advocating bloody revolution and Molotov cocktails,

(gin and tonics more likely).

But people, think about it. What is wrong with letting people live their own lives in peace?

So here’s to a peaceful revolution in our time…

We will search for a new way to move forward towards a more just world here in the great USA.

Calling All Revolutionaries: Families for Freedom

It has been difficult to find families who want to work on a new revolutionary way to provide a full life for their adult children with autism, perhaps because we have been looking for adults that are just beginning the transition process. The children are still in school and the parents are satisfied with what they are doing and receiving for services; having worked to get it right, they are making progress and perhaps even seeing the positive changes that can come with maturity and stability.

The nightmare experience of seeing all that progress disappear into the maw that is adult services has not yet occurred.

Last week I attended an invigorating “brainstorming” session about planning the future of the autism programming for the new agency that I am working with for Lily’s new life.  I was amazed to be invited and even more astounded that “Families” was the first on everyone’s list of values. So often in my three and a half-year experience with the adult system the parents are ignored or “yessed” in meetings. The attitude is one of “us” and “them”. How refreshing and encouraging to meet this very sincere group that I hope soon to be an even more active member of.

Today, looking out over the shining blue of the bay with the puffy clouds and the dappled sand, I wonder whether the first English, French and Viking settlers to these shores thought about the physical beauty surrounding them as they pulled in their nets and laid out the fish to dry in the sun.

Were they too busy working to survive to be awestruck by the colors of the sunrise after so many days of rain and fog?

Did the wildflowers blowing in the breeze ease the ache of their backs as they gathered wood for the winter and plowed and seeded the garden?

Here in the Northeastern United States, with long, cold winters of bleak landscape and hungry wildlife, we treasure the few short weeks of spring and summer, hoarding days spent fishing, gardening, hiking and sailing, or perhaps simply sitting on a rock, gazing out at the beauty.

We know what man has done to nature as well; we have the contrast of the cities and industrial pollution versus the sea, woods and farms and appreciate all the more what we still have seeing it next to the examples of destruction.

The First People, or Native Americans or Indians or whatever you wish to call them in your culture, appreciated the sustaining value of the natural world around them and protecting it has prominence in their religions and way of life. They knew this truth without need to compare with the absence of nature; it puzzles me sometimes why we seem to need to miss something after it is already gone.

Missing our school experience that treated our daughter as a whole person, and having the experience of seeing her regress under a program that sees her as flawed and broken, to be managed like unwanted refuse, we have become acutely aware of the destruction around us and wish to reclaim and rebuild her world to more closely resemble what we had before.

We will build a new world based on the rights that Americans hold to be self-evident, a revolutionary new world, dedicated to the rights of ALL people to happiness and freedom.

Perhaps we need to look for our families amongst those who have seen the future, instead of those who are have not yet experienced the destruction.

Belated Mother’s Day Card to Myself: Honor Military Moms

After reading all sorts of blog posts about Mother’s Day and mothers who are saints and over achievers, I’ve been wanting to share why I enjoy spending MY Mother’s Day without my family.

As most mothers of special needs children will tell you, being with a daughter like Lily can be exhausting.

Trotts and Lipmans in Belfast

My Princess was home the previous weekend so that she could visit with her much beloved Aunt Sharon and Uncle John who were visiting from California. Dad picked Lily up at her house and they drove to Maine where we all had a lovely time eating lobsters and walking the beach, watering the garden and taking walks in the woods and in town.

She also went for rides with Dad in the Jaguar and took the recycling to the transfer station.

All this was very exciting for our Princess who also managed to drink soap, pour liquid soap down the toilet (because she did not like the smell), drink seawater and eat seaweed.

On the Monday when I was going to drive with Lily back to Massachusetts, her anxiety level had doubled and whether or not it was  because she knew she had to leave the family party or because of seaweed aftermath (I can never tell) she became “unstable”.

Taking her back to her house has become a nightmare because she starts in with the pleading looks about five miles from the house. Then she starts belching and regurgitating, working herself into a full-blown panic attack. When she arrives at the house, she races upstairs to her bathroom, rips off her clothes and showers until she is calm or until the hot water runs out.

So going to get her is great and she is ecstatic; taking her back is overwhelmingly upsetting.

My Mother’s Day alone allowed me to reflect on how much I love her and how much I need to rest after being with her. We avoid the difficult transition anxiety completely. We see each other later in the week on Skype; she is smiling and happy with her favorite trusted care-giver.

And no offense to my Mom but I do not remember feeling the need to be with her on that specific day. Visiting Mom was a weekly event for us if possible and would have been more often if we lived in the same town. Why do people think that some flowers and a brunch are adequate recompense for all the years of worry and sleepless nights?

Mother’s Day was originally to support mothers of soldiers sent off to war, wasn’t it? We should support the military mothers,  especially those mothers of special needs children who are not granted full medical coverage for their children’s problems.  Apparently, Tri-care does not adequately cover autism treatment, especially after retirement.  (See petition HERE to urge Congress to make autism treatment available to all military children.)

So keep your baubles and flowers  for next Mother’s Day, too. Give the money to the autism charity of your choice. I will hopefully enjoy another peaceful day in my garden, resting up for another whirlwind day with Lil the next weekend.

And support the Caring for Military Kids with Autism Act  http://cmkaa.org/cmkaa-press/

Happiness is…

If happiness is the key to life, and that is what we all want from life, how do we design a support system for adults with severe autism that encourages happiness?

First we have to find out what makes an individual person happy.

To do that, the person must have a means of communicating to others what makes them happy.

That is the first goal, to encourage and respect the communication of those that we care for.

Behavior is communication. We must try to see past the unpleasant behavior to what is being communicated by the behavior. Medications mask the behavior and silence communication; that is disrespectful of the attempts of the person to communicate their needs and opinions.

If an adult with severe autism has no reliable means of communication we must help them find ways that work for them or we are not doing our jobs.

Happiness is  an  “unalienable right” according to the US Declaration of Independence. I think it is time that this right is applied to those of our citizens with intellectual and developmental disabilities.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

Autism Awareness Month: No Time for Old Ideas

“Que sera sera, whatever will be will be, the future’s not ours to see, Que sera sera…”

When I was just a little girl
I asked my mother, what will I be
Will I be pretty, will I be rich
Here’s what she said to me.

Que Sera, Sera,
Whatever will be, will be
The future’s not ours, to see
Que Sera, Sera
What will be, will be.

On NPR yesterday, Terry Gross on Fresh Air was interviewing Doris Day about this song, saying that she, Terry, had always disliked the song and that she had heard that Doris had hated it also.

My mother used to sing this song to me when I was a small child, around the same time that it was a hit song, in the 1950′s. I loved having my mother sing to me and never thought about the lyrics until I was a teenager and became more socially aware. Then, in the activist 1960′s, “what will be will be” just did not cut it with me.

When my own daughter was small I sang to her, too. The songs that my mother sang came into my head almost automatically. When we received the autism diagnosis, I revisited this song as a way of accepting things as they were, of letting go of my dreams of the perfect little girl and the perfect little life.

Gradually I rejected this song again, in favor of “You are my sunshine”  and other more uplifting tunes. (Lily sometimes puts her finger over my mouth to get me to stop singing; my voice is not the best.)

We are now being told that 1 in 88 children will be diagnosed with an Autism Spectrum Disorder by the age of 8.

That is 1 in 54 boys.

That is 1 in 252 girls.

“What will be will be” cannot be our theme song.  What should our song be?

Examining Life: Adults with Autism, Part 7-Friends and Family

Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.

Friends and Family

Lily with friends

I am trying to find families for a new and exciting home for my daughter. We are planning a home and day program that will meet the specific needs of each individual and lead to a happy life in the community.

Finding compatible parents is the first step because we all will need to be actively involved for this to work. We want to be part of her life and know and like the families of her housemates.

Finding collaborators to provide the services who share the goals and that we feel we can work with is also paramount. We have successfully brought together two groups who are committed to the same goals that we share and an academic center devoted to improving life for adults with autism.

Because there are not many females with autism compared to males, finding compatible house mates has been more difficult.  We are planning a mixed male/female house. I am not sure how much it matters to Lily who she lives with because she really bonds with her staff more than with her peers. Maybe if she lived with a young woman who was verbal and they shared the same preferences for activities in the community, perhaps she might make a relationship with a peer.

So far Lily’s female peers have been either not interesting to her or a painful annoyance. One of her current housemates screams high-pitched loud protests when she is anxious, (which is frequently), and Lily does not tolerate that well. In past situations, Lily’s aggressive behavior has disappeared when an offending noise-making female was moved to another house.

This is one of the many reasons we are making our own program; the current Agency refused to listen when we asked them not to put this loud woman in the house with Lily because Lily had already had problems with her at the Day Program. When they refused to change their plans, we asked that Lily and the woman not be in the same group at the Day Program; so far this has not been achieved.

Lily does have friends who are family friends and  she can be very social with people that she knows accept her as she is and do not expect her to be like everyone else. Staff who care about her will see the side of her that we see, the caring loving side, not the monster side.

My hope is that when Lily is comfortable in a place with staff who care for her, accept her and meet her needs,  she will blossom again and we will have the daughter back that disappeared when she turned 22 and left her school for the big bad adult world.

In the meantime, when she is at home with family and friends who love her and respect her she is generally happy and less anxious. Thank you, family and friends, for being there for her and for us.

Choosing the Wine with Uncle John

Cousin Edie, Lily, Aunt Sharon

Lily Dancing with Uncle Harvey